My headaches seem to be more lengthy and severe than most of the rest of you. After each minor concussion, which shouldn't have produced such problem headaches, I had months of constant headaches.

When I returned to my teaching job in February, I only worked for one day before I relapsed into a much worse condition than I had for any of my actual concussions. For the 4 concussions described in my signature below, I was immediately able to walk a good distance until the last one, the car accident, after which I gradually was able to increase my walking over 2-3 weeks. But now, for over 2 months, I cannot increase my tolerance for walking and I have been very sensitive to any movement, for instance when my car went over bumps in the road it took me several weeks to recover. I am still unable to walk more than 15 feet, talk for more than 10 minutes, and now (after a prednisone course) even to listen to podcasts for more than 10 minutes. Relapses in my minor progress over the last 2 months have also come from emotional triggers and slightly overdoing talking time.

My Kaiser neurologist, not knowing much about PCS, thought my headaches resembled migraines, and prescribed prednisone. This left me feeling better for the first 4 days of a 10-day course of treatment, but I feel worse than ever after stopping it. I asked for a consult with Kaiser's headache specialist, who diagnosed me with transformative migraine and prescribed a 6-day course of Naratriptan. Although this makes my headache slightly less severe, I still get headaches with any movement. I am questioning whether the migraine diagnosis is correct. The headache specialist seemed more familiar with PCS than my regular neurologist did, and said that headaches can "take on a life of their own," after a difficult PCS, and need to be treated on their own. She recommends DHE as the next step, even though as of now it is unavailable due to supply problems.

I would like to move back to Virginia to recover living with my mother, but as of now, even a short car trip is intolerable. I can't imagine a long airplane or train trip anytime soon.

Does anyone with similar experiences have some advice on how to get back some functionality? Does the migraine diagnosis sound correct?

Thanks, Joe

Do you get any relief from icing the back of your head and neck ? It may take some time of ice on for 15 minutes, ice off for 30 , repeat before you see a difference. Has the head ache specialist discussed Botox injections ?

After a year a headache specialist at UCSF prescribed nortriptyline. I had vertigo, migraines, vision issues. Any plane trips resulted in a bad case of sinus infection.

The brain was not happy, and therefore, many migraines said the specialists. The signal were being mis interpreted.

The nortriptyline helped for a while, and the migraines / headaches and vertigo stopped. At 60mg some side effects emerged so I am back down to 20mg. The vertigo is still absent, but migraines / headaches have returned.

I take tramadol and sometimes propanolol for the migraines. Icing the neck, and good food/vitamin regime helps.

I have eliminated gluten, dairy and caffeine from my diet which helps, but there are still weekly migraines.

I am told that we need to work close to our threshold, but it's hard to unravel which is the major contributor to migraines.

Best of luck!

I had disabling headaches for nearly a year and a half after my injury. I will say that classroom teaching is a killer. I can hardly think of a more brain intensive activity (I am also a teacher).

I was on amitriptyline first for my headaches. That helped for a while, but I couldn't tolerate the side effects. I have done much better on Topamax. I also switched to a whole foods vegan diet high in Omega-3s and tryptophan, and did regular hydrotherapy for several weeks. That seemed to be the time period when everything "clicked" and the headaches finally let up for good.

Now that I am over them, I don't have to be so careful about doing hydrotherapy or what I eat, but I do still take Topamax.

As for when I do get the occasional headache, my best friend is still the ice pack. I ice my head and neck and also put my feet in hot water at the same time, then lie down in a dark, quiet room until the headache subsides.

Hope this helps, and that you're able to get some relief!

My headaches would get even worse, if that was possible, from talking, walking, slight noises...any kind of movement and my head felt like it was going to explode if the car hit a bump!!

I too was a runner and that always helped with anxiety so after the concussion I could not run and that made me even more anxious, I remember the PT telling me people who were very active before a concussion quite often relapse and healing goes South as they try to do too much (I learned that the hard way

I would go for extremely short walks and that was months after the concussion, accident was over a year ago and now I can walk further but have to watch it.

Ice helps!

Hope you get some relief soon.

Thank you everyone for your very helpful comments. As soon as Mark replied advising ice, my mother went out and got an ice pack and I tried it last night and again this morning. It does seem to be working, so again, thank you!

Thank you also Mark for your suggestion about Botox. The headache specialist did not mention that, but I will ask her next time.

Eowyn, I have Topamax in the house although I have not tried it yet and have asked the doctor how soon I can start it after stopping the naratriptan.
What did your hydrotherapy consist of, Eowyn? Did a PT do that for you?

Berkeleybrain, I have been following the Terry Wahl diet, which is a modified Paleo diet that mandates 9 cups of vegetable/fruits a day, combined with wild fish and organic meat, and nuts. No dairy or grains.

Hope you all continue your recoveries. You have all been so helpful to me.

Joe

I started hydrotherapy in Dr. Nedley's Depression Recovery Program (linked in my signature). They put us in alternating hot tubs and cold tubs for specified sequences and times. The effect is supposed to increase circulation to the brain.

They also gave instructions for how to do it at home:

1. In the shower, turn your water as hot as it will go (or as hot as you can stand it) for 3 minutes. Get it all over your body, including shoulders — but NOT your head — during that time.
2. Turn the water as cold as it will go for 1 minute. Get it all over your body, including shoulders (and head if you want) during that time.
3. Repeat at least three times (you can do more if you want). Always end on cold.
4. Admire the lovely pink shade of your skin.
5. Rest for 20 minutes.

WARNINGS:

• Make sure your hot water heater is set so it won’t scald you. The max temperature you really should be putting on your body for that long is 104.
• If you have heart problems, you should check with a doctor before doing this.
• Never put your head under the very hot water.
• If you feel faint or dizzy, stop.

[QUOTE=Eowyn;1063333]I started hydrotherapy in Dr. Nedley's Depression Recovery Program (linked in my signature). They put us in alternating hot tubs and cold tubs for specified sequences and times. The effect is supposed to increase circulation to the brain.

They also gave instructions for how to do it at home:

1. In the shower, turn your water as hot as it will go (or as hot as you can stand it) for 3 minutes. Get it all over your body, including shoulders — but NOT your head — during that time.
2. Turn the water as cold as it will go for 1 minute. Get it all over your body, including shoulders (and head if you want) during that time.
3. Repeat at least three times (you can do more if you want). Always end on cold.
4. Admire the lovely pink shade of your skin.
5. Rest for 20 minutes.

[QUOTE=Eowyn;1063333]

Thank you so much for these directions, Eowyn. I tried it this morning and again this afternoon and did feel better afterwards. I am going to do it again this evening. How often did you do it or is there any reason why I should not do this as much as possible?
Thanks, Joe

Awesome! Glad to hear it helped!

In the depression recovery program, we did hydrotherapy twice a day -- morning and evening. I don't think there would be any problem with doing it 2-3 times a day.